EHCP support thread

[Phineyj]

My DD (10) is being assessed for EHCP. The council refused to assess (despite her already being diagnosed with ADHD, ASD, hypermobility and vision problems following eye surgery).

School have been supportive throughout and they are going above and beyond to keep her engaged in education.

She's about to go into year 6 though.

I took the LA to the tribunal and won.

They must produce the plan by 4th August. I think they probably will (they've stuck to deadlines so far...ish...). But I've got all the IPSEA complaint letter templates primed!

The hardest thing about the whole process is that no-one else in my life understands it or what it's like to spend all your free time essentially begging people to document the deficits your child has.

It is also a hard realisation that no-one cares much about your child's education except you.

I am also a teacher so I feel sad on behalf of the SEN DC I teach as I am told little about their needs (I spent a whole day doing DofE with one recently...I don't even know what her EHCP says...)

Join me if you are also grimly trekking through the EHCP jungle!!

I mean obviously they are hoping to improve attendance. I meant the national problem with Y11 attendance last year is perhaps why they are focusing on Y11 in particular.

Yes I'm sure lots of schools are.

One might also cynically add that GCSEs appear to have a poor effect on mental health!

@ThomasWasTortured I've just realised I've got well more than 100 pages of evidence for tribunal from all the reports so am wondering what to cut out as I need some pages to write a summary document. I'd welcome your advice.

I've got:

Original diagnosis report (private) (3 years old) (29 pages)
Optometry report and advice (private but haven't got an NHS equivalent as she was discharged from secondary care some years ago) (recent)
Occupational therapy report (private) (recent)
School advice (recent)
Speech and language therapy (council) (recent)
Occupational therapy report (council, broadly in agreement with private one) (recent) (28 pages)
Physio report (council) (recent)
NHS paediatrician report (6 months old)
[apart from the two long ones, the rest are 5-12 pages]

What would you miss out? I'm thinking it's either got to be the original diagnosis as it's confirmed by the NHS paeds report, or the private occupational therapy report? Probably the latter, especially as it wasn't actually carried out at school?

Thanks All. Have a surfeit of EP reports! A really excellent one from a top drawer independent EP - however School refused to engage, so there is no academic data. LA EP then produced a shocker of a report without actually meeting DC, which was really an attempted rebuttal of the independent report, by mischaractersing some well-evidenced conditions. This also did not contain any data on academic performance.

@MrsLamb this is a content appeal, yes? The cognitive assessments undertaken by the EP coupled with data from a SAR should be sufficient evidence.

@Phineyj if going over the page limit is necessary you can request permission (or some just submit and then SENDIST will decide anyway). There is some flexibility if there is good reason. Try not to worry about it.

If you do want to get to 100 it is difficult to say what to remove without knowing more and seeing them. How recent is recent? A couple of months or are any over a year?

Does the original diagnostic report add anything the paed report and other reports don’t cover? EHCPs are based on need rather than diagnosis, so if the other reports cover everything, the diagnosis is confirmed elsewhere and the LA is not disputing the diagnosis it may not be as useful as other evidence.

The independent OT being undertaken outside of school doesn’t necessarily mean it is less worthy. Does the independent OT report cover things the LA OT report doesn’t? Is it more detailed, specified and quantified? They usually are. Is there anything in the LA report that isn’t in the independent report (other than it taking place in school)? If the independent OT report really doesn’t have anything additional and isn’t any more detailed, specified and quantified then duplicating it makes it less relevant if it is at the expense of other evidence that adds something extra to your case.

What is the school evidence? Can it be condensed onto fewer pages? For example, some try to send 2 pages with half the page blank.

EP report will be 18 months old if hearing isn't expedited. Is this a problem?

@MrsLamb reports up to 2 years old used to be considered up to date. Over the last few years SENDIST has considered reports much younger out of date. Depending on what other evidence you have/how old that is, getting an updated assessment or addendum added would be helpful if possible, especially if anything has changed.

Watching the thread, its so helpful all the questions and answers, will be checking IPSEA website as @Phineyj wrote about for the refusal to assess and helpful information regarding basing 'refuse to assess tribunal paperwork on the part of the code that covers children who are working ok academically but with an extraordinary amount of effort'..... will keep this in mind.

@MrsLamb the EP at my DD's school did not meet her either and was reluctant to refer her for assessment, he wrote something flippant on the form like 'referring as per GP and mothers concerns, but not sure based on what I have read' he didn't meet her.... I find that appalling, he was only supposed to sign the form not comment, (particularly since he had zero engagement with her) we have subsequently seen the paediatrics team and CAMHS, no formal diagnosis yet, (the long wait) but they strongly suspect ASD. I found the EP's input so insulting considering he hadn't even met her. (he is not the only one but thankfully have since met some amazing professionals who don't think like him).

All @ThomasWasTortured advice is as always brilliant and helpful.

Thanks @ThomasWasTortured, that's super helpful.

I'll maybe do two versions, one with the independent OT in and one without and then seek permission to go over by 10 pages or so. I think it does add because they really went into the sensory aspect. Besides it cost me £655!

By "recent" I mean the reports were done May to July during the EHCPNA. But does that mean by next spring when the appeal is actually looked at, they'll be deemed too old? Should I keep the independent EP date I've got for December then and send that in as late/extra evidence?

Gosh, it's rather concerning if reports are deemed too old because of the delays introduced by the appeal process itself.

Definitely send the independent OT if it covers sensory difficulties. Without seeing what evidence you have/knowing your case it is difficult to give a firm opinion but as this is a refusal to issue appeal as long as you feel there is enough evidence to demonstrate an EHCP is required I would save your money for if you need appeal content/placement.

Thanks. I'm sure someone else will appreciate the slot.

Hi can I join you all please?
I have an autistic 5yo boy who is very able academically and an absolute pro at masking which is making our life very hard.
He can’t cope at all when he comes out of school, behaviour is so difficult. He refuses to go in some days, I assume as the effort is so huge, but obviously school see no issues while he’s there there. They seem to believe me and are supportive though.
I have submitted a parental request for EHC NA and we are almost half way through the 6 week window for them to decide. They’ve told me the panel will be held on 26 Sept, so not much longer to wait.
I’m fully expecting a no, and have a private EP booked for November to gather evidence for our appeal or in the unlikely event they do agree to assess, as insurance against a poor LA EP report.
I’m strapping myself in for a long and bumpy ride, but one I feel is absolutely necessary to make school a viable option going forward.
I’m so worried about his future, that either he’ll stop masking and they won’t be able to handle him in school, or more likely that he reaches burnout and stops attending completely.
@handmademitlove our kids sound similar with the academic ability and masking, how old is yours? So difficult isn’t it 😓

@TeaInTheGarden she is 14. Diagnosed with asd at 13. The most frequent comment I get is 'she doesn't seem autistic.. she's really bright .." 🙄

Hi @TeaInTheGarden welcome :0) this group has been an invaluable source of information for me, (and a great sounding board/place to vent my frustrations :0)...... my DD is 8 and I have exactly the same problem, I have been consistently told she is 'fine' no problems at school, with extreme melt downs at home. I applied for an EHC and was refused I am appealing, I have been told I am likely to win the refusal to assess (as she meets the legal threshold) then another battle begins I guess.
It has taken my DD's school a very long time to accept what I was telling them, as she is so quiet and timid in school. fortunately the first round of assessment the paediatrician told me she has clearly been 'masking' and is exhausted. I realise when I wrote on here last week that the LA EP wrote something flippant on her form to refer her, I should have added this was after him delaying and delaying (and never meeting her) and when I asked the school why he hadn't signed the form and why the long delay, the senco sighed and said 'Look the problem is we just don't see what you say is happening at home....pause 'its not that we don't believe you...'

but they didn't.....it has taken a CAMHS psychologist contacting them to get to the point I am at now, part time (again) with extra support mechanisms,....(time out card and so on) It is a tough road but hopefully we will all get to the end of it successfully, (hopefully :0) ... It's so wrong we have to suffer this continuous fight with all the stupid red tape, and obstacles..... I hope you get the outcome you want, stay strong :0)

Gosh @handmademitlove if I had a pound for every person who has said something similar to me, "she doesn't seem autistic...she's really bright" I would be very rich....the side long glance the shake of the head "I really would not have thought she's autistic no not at all"..... frustrating, annoying total lack of insight,

Yeah that’s so frustrating. I think a big part of the problem is the massive stereotypes surrounding autism. Things really need to move along!

^that was to @handmademitlove

@CHAKRAlight they sound very similar. My son is so timid and quiet. It’s took me telling the school that he won’t ask for basic things like a drink or to use the toilet for them to realise he’s not asking. They’re really lovely but just not trained in this kind of thing at all. I know as I’m a qualified teacher myself.
we have a new SENCO who seems very keen to help so that is good news, she’s done her best with the forms but I’m 95% sure we’ll get a refusal to assess anyway. Like you say it’s awful we have to fight so hard, that’s not what it should be about to get help for our kids.

@TeaInTheGarden appearing to cope ‘fine’ at school but exploding at home isn’t uncommon, sadly. It is often called the coke bottle effect.

@CHAKRAlight when you say DD is part time again. How long is she part time for and when/how long for last time? Part time timetables should only be short term (not legally defined but generally considered 6-8 weeks/1 half term) aimed at reintegration. After that DC should either be in school full time or if they can’t attend full time the LA should be ensuring DC receives a suitable full time education by providing alternative provision as well as part time school or instead of.

@TeaInTheGarden welcome. It's so frustrating when that happens and school does the 'but they're fine in school' thing. I apologise on behalf of the teaching profession for the arrogance of some of my colleagues :(. We have been very, very lucky and school has never been like that with us. Or they never said it to our faces if they thought it, anyway. I suspect DD's autistic masking (while excellent, and it turned out around age 8 or 9 she was a super actress too) doesn't quite conceal her difficulties in the way that some other children can do, because she's not that great academically and also the ADHD means that she makes herself conspicuous by fidgeting, calling out, not finishing the task, losing things, etc. One time we were asked in to see her books and every single sentence was half finished, with the pen just trailing off down the page!

I think also her teachers can see that she's quite explosive physically -- she needs a lot of physical activity to stay regulated and fortunately the school takes sport seriously and there's a good amount of play space for breaks etc. So maybe while they'd never actually seen her kick someone in the shins, maybe it wasn't too much of a stretch to imagine her doing so? Oof, she was such a shin kicker when she was 5-7. Sooo painful and guaranteed to make me lose my temper.

On the plus side the fact you're noticing all this while your son's 5 is a big bonus. I didn't start on EHCP till DD was year 5. I was dithering because she was at a private school and (to my shame) I was wondering about keeping it all under the radar in case private secondaries would be prejudiced about admitting her.

Now, the older she gets, the more obvious her difficulties and differences are and I wish I'd started on the EHCP after diagnosis. Although then I wouldn't have been able to push the "phase transfer" element and no doubt the LA would have been even more insistent that her needs are being met (well yes they are LA! At our expense!!) I want now to send her to the state school where I work because a) I can keep an eye on both her and my colleagues and b) we have a lot more expertise with SEN kids of her type than private schools. Plus, you know, we've seriously overspent on all this business. SEN is expensive :(. At the moment she's nervous about the commute but we'll seen.

I wish I'd called this thread something more imaginative to reflect the parallel reality we all exist in.

I was chatting with my neighbour yesterday about local schools (her eldest is year 4). We have a fair number of grammar schools in the area -- only one in our actual borough, but it's a realistic option for many DC if you're willing for them to study for the test and then to travel a bit. Her DD is an obvious candidate so I was passing on some 11+ materials (that have sat unopened after DD's school gave them to us) and also giving a few tips on distances, admissions etc. I told her the ed psych had found my DD is only working at year 4 level in year 6 (it was good to have this confirmed as I had actually noticed little neighbour's work is better!). I am a bit sad about this of course. My neighbour was all 'oh that's in the normal range, it's not a problem, they can differentiate'.

I thought yes, well, you wouldn't be saying that if you'd just been told your year 4 was working at year 2, would you? Did she think I liked passing on a big pack of 11+ material unopened, or that I'm enjoying being different to the other parents in my peer group or that it's fun spending all my time off trying to craft a SENDIST appeal?

Bah.

P.S. @TeaInTheGarden top user name.

Hi @ThomasWasTortured DD was going in to school part time for about 5 weeks before the holidays, she would not go back at all the 1st week, so they said they will let her do part time again, increasing the time each week with the understanding that she is back to full time attendance by half term. I am a bit worried about it (when it gets to the full time) but they are now giving her much more support than before (finally), she now goes to a safe, quiet space after lunch instead of into the play ground (she can't cope with the noise she has ear defenders but it is also being pulled by other children who maybe don't mean to but she can't tell them not to pull her, so like you say the coke effect happens when she comes home. its a bit of a shame she can't go outside but she is managing morning play (just about) as it is shorter.

I have been incredibly stressed about it all (worrying about her point blank refusal to go back the first week and seeing how distressed it was making her me trying to get her back in, 'it will be fine etc...' when really her anxiety was through the roof and it wasn't she didn't want to go she just couldn't, but I am glad you told me about the alternative provisions because if it all collapses and she starts refusing to go in (hopefully not but I have no idea at this stage...at least I know that there are other options that must be offered to me, thanks for letting me know it stops me panicking about it, hope we don't reach that stage but it depends on how she copes the next couple of weeks.

@TeaInTheGarden wow when you said your DS will not ask to go to the toilet or for a drink, this is exactly the same with my DD, I was told (last term) in a round about way that I was making too much of a fuss for asking for her to have water, she is perfectly capable of asking for water herself ....three days ago the same, boiling hot and she had a really bad headache, I asked her if she had drunk any water, "no" I said why not, you must ask, its ok you are allowed etc.... she is just too timid to ask, I think I have sorted it out now but its all those things, not speaking up which have always been interpreted as her being 'fine'. yes I agree re stereotypes of autism, no child or adult is the same and are all individuals, I think it needs to stop being so much of a tick box because it makes people too blinkered with their view of autism 'oh you must be great at maths' etc when its not true, everyone is different and that uniqueness should be celebrated.

@Phineyj The good thing about the name you gave this group is that it is eye catching and reflects exactly what we all need 'support'. I clicked the moment I saw it 🙂and am glad I did.

Sorry I promise to read everything- however just got my complaint back from the council as they closed it as they have dealt with it previously (no they haven’t same old rubbish which I’m repeating)

but this make me laugh….

Pronouns: she/her #my name is: Jess-e-ka Brook

who cares maybe I shouldn’t say that name. But instead of all that rubbish maybe they can deal with children and ehcps not saying that rubbish on the end of their name 😂

@Phineyj gosh how funny, my son is also a shin kicker! I think his masking must be unusually good, he’s literally a top of the class role model for how to sit on the carpet 🤨
It completely blows my mind and I question my sanity almost daily!
But I know logically it’s all masking and I actually think possibly he’s fawning, as he’s so anxious.
Masking is fascinating, on the football pitch he’s loud and vocal- like a proper footballer. It’s like he has different characters he can portray.
Our school are really nice about it all, but it ends at being nice and so far they’re not actually doing anything. They talk about it and I’m waiting to see what happens this week….
it’s funny actually- obviously me doing the parental request has caused them a lot of paperwork…. The SENCO is new (new to the role not the school) and in her first week she’s had all this to do. She’s really worked hard on it- had me in to ask all about him and then showed me the forms when she’d finished. Obviously it asks for 2 rounds of SEND support etc. She’s filled it in describing the support they’re going to put in place. So I’m waiting to see it actually start now…. I’m hoping it helps, and it’s good that something has come from me
doing the request already- kind of kick started them to actually do something instead of taking him on face value.

Where are you up to in the whole process?

and yes, a cup of tea in the garden is the best!

@CHAKRAlight that’s interesting, I wonder if not being able to ask for things like that despite (in my son’s case at least) being more than capable verbally, is common in autistic children?
I’m using it to further my argument for an assessment- how will I ever ask for help with his work if he can’t ask to go to the toilet?!
I don’t actually give 2 hoots about academic progress right now, we have far bigger fish to fry, but I know we need to play the game!

@TeaInTheGarden @CHAKRAlight have you looked at selective mutism (hate the term as selective makes it sound like a choice)?